key: cord-0965347-jyb9f3hb
authors: Jackson, Karen; Waters, Mary; Newman, Lisa A.
title: Sisters Network, Inc.: the Importance of African American Survivor Advocates in Addressing Breast Cancer Disparities
date: 2021-03-09
journal: Curr Breast Cancer Rep
DOI: 10.1007/s12609-021-00404-4
sha: 8ddbec2eb1e18076f0d4b73f74821e6b5b843229
doc_id: 965347
cord_uid: jyb9f3hb

PURPOSE OF REVIEW: To explain the role of African American survivor advocates in addressing breast cancer disparities. RECENT FINDINGS: The Sisters Network, Inc. is a national African American survivor advocates organization, founded in Houston Texas in 1994 and active today via affiliate chapters throughout the United States as well as its national headquarters. The Sisters Network provides essential outreach, educational, and research support to the breast oncology community. SUMMARY: The breast oncology community should partner with the Sisters Network and support their activities in efforts to achieve breast health equity.

Steady gains in breast cancer survival rates that have occurred over the past several decades can be attributed to screening programs for early detection as well as clinical trials resulting in improved treatments. Large-scale, effective screening programs and robust clinical trials accrual is heavily dependent upon partnerships with survivor advocacy organizations. Survivor advocates are powerful and trusted members of the oncology patient population, and this is particularly true in the field of breast cancer where advocates have spearheaded the implementation of various breast cancer diagnostic and therapeutic advances. Breast cancer survivor advocates have served as ambassadors to promote mammographic surveillance in the workplace, in churches, and through print, broadcast, and social media. They have been foundational partners in philanthropic research fundraising efforts. Advocates serve as indispensable reviewers of grants and protocols as well as study co-investigators, ensuring that issues of survivorship and quality of life are appropriately prioritized. They have also been fundamental partners in legislative advocacy, calling for the protection of government funding for research. Survivor advocacy in the twenty-first century also features widespread breast health messaging through the full spectrum of social media outlets.

African American women have a more advanced stage distribution compared to White American women [1] ; they experience higher death rates from breast cancer [1] and are more likely to be diagnosed with biologically aggressive phenotypes such as triple negative breast cancer (TNBC) [1] ; and worse outcomes have also been reported among African American compared to White American patients with hormone receptor-positive disease stratified by gene expression profiling [2] . Mammography screening for early detection and improved outcomes from TNBC is therefore especially relevant for African American women [3] . Furthermore, research to evaluate the genetic and biologic determinants of breast cancer disparities should be an imperative in efforts to achieve cancer health equity, yet African Americans are disproportionately under-represented in oncology clinical trials [4] .

Clearly, African American survivor advocates can play a unique and vital role in addressing breast cancer disparities [5] . The oncology community is therefore extremely fortunate to partner with the power and strength of the Sisters Network, Inc., a national African American breast cancer survivor advocacy organization [6] . The mission of the Sisters Network is based on a commitment "to increasing local and national attention to the devastating impact that breast cancer has in the African American community" and their goal is to "reduce the mortality rate of breast cancer among African American women by generating awareness, garnering attention, providing access to information and resources, and supporting research efforts in the ecosystem". 7 The Sisters Network was founded in October 1994 by Karen Eubanks Jackson, CEO, an African American woman who was diagnosed with breast cancer earlier in 1993 and has survived being diagnosed four additional times with breast cancer. Her experiences and observations while undergoing breast cancer treatment motivated Jackson to create an advocacy organization dedicated to addressing the unique needs of African American women. The scope of these needs is broad and ranges from the availability of more diverse hairpieces/ wigs and mastectomy prostheses compatible with African American skin tones to increasing breast health awareness and treatment opportunities among the general African American community. Jackson's efforts began with a meeting of 15 women in 1994. Today, the Sisters Network has evolved into a national organization of more than three dozen affiliate chapters spanning from the east to west coasts of the United States [6, 7] .

"Stop the Silence" is the national slogan for the Sisters Network Inc., chosen in the organization's effort to acknowledge the predisposition of many African Americans to mistrust and fear the medical establishment. These inclinations, coupled with health care access barriers created by socioeconomic disadvantages, systemic racism contribute to the inferior outcomes that are reported for African Americans compared to White Americans related to a spectrum of both benign and malignant diseases. Sisters Network members invest their time, dedication, and energies into their commitment to improving early breast cancer detection among African American women through standardized regional, community-based as well as national outreach and education programs. Under the leadership of the national headquarters, Sisters Network membership also vigorously support research by encouraging breast cancer clinical trial participation and by encouraging investigators and funding agencies to address questions related to the breast cancer burden of African American women.

The Sisters Network membership empowers new members, newly diagnosed patients and the African American community in general, with the most updated information possible regarding the prevention, early-detection, and multidisciplinary treatment options for breast cancer, including participation in clinical trials. The organization itself has actively participated in a variety of multicenter research programs related to breast cancer pathogenesis and survivorship. Members of the Sisters Network have served on advisory boards for Susan G. Komen for the Cure, the National Cancer Institute, and the American Cancer Society [6] . As described in greater detail on their website [7], a few of the many highlights of the Sisters Network activities include the following: 

Race, ethnicity, and clinical outcomes in hormone receptor-positive, HER2-negative, nodenegative breast cancer: results from the TAILORx trial Abtsract GS4-07

Evaluation of triple-negative breast cancer early detection via mammography screening and outcomes in African American and White American patients

Representation of minorities and women in oncology clinical trials: review of the past 14 years

The perspective of African-American breast cancer survivor-advocates

Advocacy Corner: Sisters Network

Publisher's Note Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. For additional information regarding the Sisters Network, please visit www.sistersnetworkinc.org